Cliffnotes of my splenectomy for Jeffrey

Jeffrey

So sorry about the delay in answering your question–

- Also, I thought I would start another posting.

Here’s the cliff note version: I had ITP for about a decade and nearly all of that time was taking daily prednisone. I was prednisone-dependent: dropping the dose would result in dropped platelet values- and coincidentally the numbers were about the same –that is, 25 mgs/day would keep my values in the 20s. About six years in I developed diabetes from the prednisone, although my bone density was not adversely affected, thankfully. I tried 6 different immunosuppressants (three in combination), including Rituxan to get off the prednisone, to no effect.

My Dr. would occasionally suggest a splenectomy, but the thought of major surgery was scary and it seemed easier to just keep taking a pill every day.

Then Sept. of 2011 my numbers bottomed out more or less to zero. We boosted pred to something like 125 mg, to no avail. IVIG got the numbers up to somewhere around 40-60 for a few days, but they went back to the bottom and another week of IVIG did nothing. We started Nplate to no avail. One weekend I had platelet transfusions.

During that crisis I had mouth hematomas and my skin was turning a deep purple from the spontaneous bruises. Once, sitting in a chair, I watch a bubble shape, about the size of a half-dime, raise on my forearm in a few minutes – over the next few days it flattened to a deep purple area, filling in some of the non-purple skin left. I could go on- it was a harrowing time. I was hospitalized four times during 2 months.

We planned a splenectomy under the low-zero platelet conditions, but in the meantime we were doubling the Nplate dose every week. Finally, I seemed to respond and had a reading in the teens. We decided to hold off on the splenectomy to see if the Nplate would kick in. Over the next week my numbers doubled each day until they leveled off in the 600s. What a relief! I decided to use these high numbers for a safer surgery and had my spleen removed. I decided I’d rather take the chance with a splenectomy rather than inject Nplate weekly. I am not a hematologist nor an immunologist, but I am a research scientist who knows a lot about how growth factors cause cancer. I already knew I was already producing a lot of platelets with the ITP (that were getting destroyed) and the idea of boosting this by hitting my marrow with Nplate scared me a lot more than surgery or the splenectomy side effects. That said, from this site, it looks like Nplate is on the safe side, so far. And, of course you have to decide for yourself, using what information is available at the time. This is not always an easy thing.

After the surgery, my numbers bounced a little but soon settled around 250 where they’ve been for the last 14 months. I tapered off the prednisone and have been drug free for about 12 months --and the diabetes reversed.

Regarding after the operation and athletics. I had the operation about a month after my 52 nd birthday. I was extremely athletic as a young man (had a basketball scholarship) but had gotten rather out of shape in my middle years – although I did go to the gym several times a week for years up to the crisis. This is nothing like your triathlon activity and I’m sure being in such good shape helps during any surgery.

The 2 months of no exercise, and then a lot of sitting w IV drips and then getting major surgery wiped me out to a surprising degree. Also during this time between the stress and high steroids I developed a truly crippling insomnia.

What really floored me physically was tapering the high prednisone doses and getting off a many year habit. I tapered over two months, praying for my adrenals to start working again. I needed to seriously nap most days to get through the day and every joint ached like hell. When it came time to cut the dose my body begged me to put it off a day- it was a real addiction. I cannot separate the experiences of the physical challenge of recovering from surgery and getting off prednisone.

But a year and a few months later, all is fine. I am drug free, diabetes free and going to the gym most days and feeling really good. I had blood work a few months ago and my hematologist said we’ll do a last one in 6 months and then he never wants to see me again. Feels bittersweet- it's a very nice clinic and now I understand who those people were that would stop by with sandwiches and treats when I and others were getting our IV treatments. I will do so in the future.

So good luck, read the literature, listen attentively but critically to everyone who offers an opinion and decide for yourself. I wish you much luck and health!

Mark

PS You should have seen the non-cliff notes version.

Mark!

Thank you so much for your information. I, like you, am very analytical. Math guy! Your story was very informative. I am really struggling with the steroids. I have gained 45 pounds in 2 months. I have kept training and working towards this years season, but it does get discouraging with the weight gain. Did you have trouble with that? If so, during your years on the steroids, did you have any tricks you used for weight control?

I go back to my Hematologist/Oncologist tomorrow for blood work and hopefully some direction. My counts have been from the 20's to the 40's since this issue was found a couple of months back. If my counts come up, then ITP diagnosis, if not, then it will be a bone marrow biopsy. We shall see!

I live in Indiana and my training is now indoors. I hope that I have a grip on this before the weather breaks. I have one last question. What was your recovery like from the surgery? How long before the effects of the spenectomy were gone, soreness, etc. Did you have any issues with clotting? As I progress into my last year of my 50's, I can hardly wait to see what the 60's bring! LOL

Thanks you again for your time and consideration. It is very nice of you!

Jeffrey

Here is a link to an older response I made with an even shorter cliff notes summary:

Forum Message 7646

Note this is two years old, so I am now five years past and still have 350k platelets.
I had the splenectomy only 6 months after I was diagnosed, but by then I was sick of messing
with medications (WinRho & steroids). I decided to take a higher-stakes roll of the dice to
see if I could buy some time. It seems to have worked!

Note: I am a physicist & electrical engineer: also an analytical type. I did a significant risk analysis.

Thanks for the info. I think that I am going to be a lot like you. I am not going to mess with prednisone forever! I am not one to sit and wait! I love running, biking, triathlons and things like that and I am not going to be sidelined!

Thanks again and please stay in touch. I just posted under, Not a Happy Camper!

Jeffrey

Jeffery

I have no solution to the weight gain. Although, when I got off prednisone the weight seem to drop by itself.

As for what my recovery was like - as I wrote it blended into the prednisone taper. However, immediately afterwards (the first 4 weeks or so) I had to learn to hold my major surgical site and kind push when I was getting in and out of bed- and couldn't sleep on that side for a while. I got advice from friends and relatives who had surgery and i imagine there is a commonality in that experience. (also with the Nplate-boosted numbers I had it laparoscopically whereas if I had had it done with low platelets, it would have been open surgery).

As for trouble w clots, none so far, but I think this fact is probably meaningless, as I think a clotting problem can arise throughout ones life- .

Mark

I wouldn't consider the clotting problem meaningless. There is a lot of research to support the fact that people with ITP are more prone to clots, and even more so after splenectomy and/or use of N-Plate.

33% of people with ITP also have APS antibodies. Those are known to cause clots. I was surprised to find out 8 years after my ITP diagnosis that I had those antibodies. No one tested until I asked. I am now on a baby aspirin every day and am so glad that I haven't clotted (yet). I am also glad that I chose not to have a splenectomy when my doctor pressured me a few times.

Lots of people do just fine, so you guys could be some of the lucky ones. I believe that it's better to be aware of the risks which is why I am telling you. You can plug your ears and sing "la la la la la la la" if you want to. :whistle:

Sandi

La la la la?? !! gimme a break.

You completely misread my intent. I was stating that the absence of clotting in one person is meaningless- I would draw no conclusions from that.

Please read that sentence again:

"As for trouble w clots, none so far, but I think this fact is probably meaningless, as I think a clotting problem can arise throughout ones life- ."

Mark

I was kidding, Mark.

You're right, I did misread that sentence. I have so many to read that sometimes I skim. Sorry for the error.

Yes, clotting can arise throughout ones life, but have you seen any of the people here with low counts who also need blood thinners? I have. It's rare, but I've been surprised by the number of them recently, and by the shock of how the whole thing unfolded.

I'm done. Usually, people appreciate the information.

Hey Sandi,
This one is for you: frequent aspirin use tied to macular degeneration:

www.cbsnews.com/8301-204_162-57565181/daily-aspirin-may-increase-risk-for-age-related-blindness/

if it's not one thing, then it's another.

Sandi

I apologize for my tone - I'm at work dealing with deadlines and the end stages of a flu. (office door shut, no one allowed in so I don't spread it).

I, for one appreciate the info.

One day I want to read those papers in detail and debate/discuss the clotting problem. But dang it, I am always so behind in reading for my own work that it can be very stressful -

Mark

Ananta - Everywhere I turn anymore, there are problems with meds. My Mom has macular degeneration, so I'm sure I can expect that too at some point. I do take a lot of the supplements that tend to hold it at bay, so maybe it will be okay. I think the aspirin is more important at this stage though.

Mark - okay, let's wipe the slate clean and start over. I worked a stressful job for 16 years (recently quit in October) so I know how those days are. I became a permanent crab. Sorry you have so much pressure....it can sure be taxing on health.

I'd love to discuss clotting with you at some point. We used to have a doctor here (his sister had ITP) and the conversations were very stimulating. I miss that!